Our sweet baby girl was born with a rare skin disease called Epidermolysis Bullosa. On the day she was born our lives changed forever. Through her life God has shown us his power, comfort and healing hand. We are blessed to be Ella's parents and can't wait to see what God has in store for her life.

Wednesday, July 18, 2012

Ella’s
GiGi and three of her best friends have been working on a very special project over
the past 2 years. They decided to write
a play. Yes, they wrote a play. It’s not every day that 4 middle aged women
(sorry ladies, just speaking the facts) just decide that they’re going to write
a play. So now that the play writing is
over, what’s next? Well, you perform it
of course!

Starting
this Friday night, GiGi and her friends will be performing “What we were
talking about?” A story about…well,
about their lives. I can’t wait to see
it!

This
play is being done to raise money for Debra of America, a non-profit organization that
helps families impacted by EB. All
ticket sales will go to Debra, and donations may be made to Debra in honor of Ella
Murray or this play.

This is the first time we are asking for financial support through this blog to benefit EB research as well as family support services for those impacted by EB. If you feel led,
we’d appreciate it if you could donate to Debra in honor of Ella and the wonderful work of GiGi and her pals' efforts in creating and performing“What were
we talking about” by clicking on this website below:

Sunday, July 8, 2012

Did
you hear about the big storm that ripped through Northern VA?No?Well then you missed out because we had a doozy and the Murray’s got to
experience it in full force.First, Ella
and I were on a plane and we flew through the storm…yes, you read right.The storm was approaching Cincinnati as Ella
and I were leaving there, so the pilot wanted to leave before we hit any of the
really bad weather.The result…the first
30 minutes of our flight were spent with Ella clutching my leg and hunched over
in my lap while I kept faking a smile and telling her it was all going to be
ok.Meanwhile, my mind was going over
everything in my life and making sure there was no stone un-turned.No joke, I seriously thought we weren’t going
to make it home.It was the worst flight
I have ever been on!

We
did make it home and a few hours later as we were getting into bed, we heard
the wind outside and soon the power went out.We were without electricity for 2 days and without home phone and
internet for 1 week.Thank heavens for
friends and our basement!The first night
I knew it was going to get hot really fast, so we all moved to the basement.Ella was very excited to sleep in her new Cat
in the Hat sleeping bag.Saturday we
spent the entire day at our friends house.They hadn’t lost power, so we took some of our food over there to put in
their refrigerator, and made them dinner as a thank you.Sunday we headed to church, then avoided
coming home any way we could…lunch out with friends and a movie was the perfect
diversion.

At
3:45 am on Monday morning I woke up to a bright light staring in my face.At first I was mad…”What in the world is that
light doing on?”Then it hit me…THE
LIGHT IS ON!!!And I hear the AC
running!!!I was giddy with excitement,
so giddy that I woke Joe up to tell him the good news.

Of
course the day we finally got power I woke up sick.I’m rarely sick enough that I’m completely
laid out, but that’s exactly what happened.For 2 days I did nothing but lay in bed, sleep, and wallow in self-pity
with how sick I was.By Wednesday I was
back to feeling half way normal and was able to clean up our messy house.

There
you have it…my excuse for not blogging sooner.The above, and the fact that Ella and I were in Cincinnati for 3 days
prior to losing power.She got her belly
button changed out with something smaller and more permanent…she did awesome…no
biggie.

So
now I’ll back up and try to catch you all up.

Thursday
June 21 was Ella’s official birthday.She insisted on wearing her Cat in the Hat outfit for the occasion.I still can’t believe we have a big 5 year
old!Where has the time gone?

As
a special birthday surprise, a friend of ours got us tickets to go see the
musical version of Beauty and the Beast at National Theatre in DC.My parents had taken me to see this show when
I was in high school and since Ella loves all things princesses, I knew she
would love this show too.As an added
bonus this friend (who works for the production company that puts the show on)
got us a very special meet and greet with Belle.Yes, we got to meet Belle in real life!

We
decided to keep this a secret from Ella.We knew that if she knew anything about it she would wake up every
morning asking if today was the day she’d meet Belle.She did, however, know that there was a
special birthday surprise and that she would find out about it on Sunday
morning.So on Sunday morning Joe and I
were laying in bed sleep and at 6:30 am we heard, “I’m awake.What’s my surprise?”We tried to get her to go back to sleep, but
there was no way that was happening.Finally we went in and told her all about how she was going to meet
Belle in real life and see her since and dance on a stage.Ella was beyond excited!She picked out a very fancy dress to wear for
the occasion and made sure Joe and I were both up and ready with plenty of time
to spare.

We
arrived at the theatre and soon headed upstairs to wait for Belle.Ella was her typical shy self, but she did
ask Belle a very important question, “How many books have you read?”Belle gave Ella some very special presents
including an authentic Beauty and the Beast rose, a t-shirt, a purse, a book
that Ella has looked at no less than 500 times, and of course a Belle tiara.They talked and got their picture together,
and even twirled their dresses together.It was SO AWESOME!!!Ella loved
it so much…and so did her parents.

Ella
watched the show with full attention.I
don’t think she took her eyes off the stage once the entire show.At the end, as the characters were all taking
their bow, I couldn’t help but cry.It
had been such a wonderful show and wonderful experience.

I
have always been so thankful to grow up in a family that took me to plays and
musicals from an early age.Even though
many of the things we saw were local productions, it was the appreciation of
theatre that I developed.I was 13 when
I saw my first real life Broadway level musical…Phantom of the Opera (with
Michael Crawford I might add…if you don’t know who he is you need to look it
up).I am so excited that even at 5
years old Ella is developing an appreciation for theatre.She loved every minute of the show and I am
so thankful to our friends for getting us tickets and especially for
introducing us to Belle.